“Too many of us are dying from cancer and we kind of don’t know why and we need to be involved in research in order to benefit from the answers that research can provide.”
There are good reasons why some blacks are cautious about participating in medical research — like a history of segregated, low-quality hospitals and research projects like the Tuskegee syphilis study that harmed African Americans.
These days, studies and clinical trials must undergo ethical scrutiny — but African Americans are still underrepresented. To increase their participation, MD Anderson reached out to the Windsor Village church. Instead of asking people to drive to the medical center, the researchers went to the church to conduct the study.
“I think you’re always more comfortable in your home than you are somewhere else, and so for us the church is like a home.”
That’s Brian Stevens.
He serves on an advisory board that has guided the church through the three-year research project. He says that he enrolled in the study because it’s not right that African-Americans have higher rates of cancer, and death from cancer, than others.
“If somebody attacked my family, I would defend them. And so it just seemed to me that if cancer is attacking the people that I love disproportionately to others, that ought to stand up against that as well.”
Church members in the study answered questions about their diet, exercise and lifestyle. They’ve also provided DNA and information about their jobs and neighborhoods — places where they could be exposed to chemicals or environmental stress.
McNeil says the goal is to figure out how all these factors could increase cancer risk.
“Is it more of an access issue, is it more of a not having health insurance, is it more about poverty and living in poverty, is it more that we tend to live in neighborhoods where there are fewer health promotion resources, is it that we have lower social support.”
During the study, church members have access to a medical resource room at the church and a personal contact at MD Anderson.
McNeill says all those steps created trust, and she quickly reached her limit of 1,500 participants. The study is now entering its third and final year. No results have been published yet, but McNeill has promised the congregants they’ll be the first ones to know.
From the KUHF Health Science and Technology Desk, I’m Carrie Feibel.